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Cameron was discharged last Wednesday and we got permission to go to Florida to attend Nick’s sister and Cam’s godmother, Laura’s beautiful wedding. It was incredible fun and everyone was so excited to finally meet Cameron, because for so long we wouldn’t bring him with us to functions, due to his low immunity. We still need to be extremely careful with him because he is not up to date with his vaccinations, so being around children could be risky. We do our very best to wipe down everything he comes into contact with using Wet Ones to sanitize everything, like new toys etc. Don’t worry, he had his own co-sleeper bed to sleep in out there. It will forever be dangerous for him to get sick, especially anything that causes respiratory issues, but he will grow stronger as he gets older. Anyway what an amazing event! We were so joyful to attend such a wonderful occasion. Congrats to Auntie Laura & Uncle Augie. Enjoy the pics!

Cameron was discharged from Chnola yet again yesterday afternoon with the right chest tube still in place. There is barely anything coming out of it I count .1cc sometimes but it’s really empty most of the time I aspirated so far. We are to return Monday for X-ray and any update on where the Doctor wants to go with Cameron’s pleural effusions, if there are tests to be done. We are on all the same meds as before with the addition of the omnicef due to the chest tube. We asked about allergy meds because he still has a super stuffy nose; but it was noted that most of the time they contain an ingredient which would cause the heart rate to lower and we should try to avoid them just use a humidifier. Cam is still on the 875 total daily fluids for his formula which is tolerex at 20 calories with the beneprotein. We are thrilled to announce Cam was introduced to baby food for the first time and we were so silly excited it was like a huge event for us. We could just call it an early happy 9 months Cameron!

Any food Cam eats absolutely has to be fat free due to the pleural effusions so its only fruits and veggies no meats. He is allowed 3 jars a day breakfast, lunch and dinner which does not count towards his formula feeds and we hope really just helps him to not feel so starved from the fluid restriction. Also, it was really fun to see him finally get some real baby food he was so adorable! The Occupational Therapists came by our CICU room the other morning to help ensure Cam was getting support since he is past the normal age baby food is allowed, but Cameron took to that spoon and stage 2 baby food like a mad champ! They even commented how they have never seen anyone take so well to the spoon or food introduction for the first time due to the special situation with restrictions. Now Cameron did have a few spoons of prune flavored baby food months ago for assistance with movements but we really don’t feel like he could remember that or the one attempt at cereal which I failed at due to formula flavoring it. Usually the babies reject the texture or new food which makes for a big mess and more involvement with OT. The babies would need to learn how to use their muscles in their mouth to eat properly and take the food off the spoon as well as pushing it to the back of the mouth and allowing the food to be swallowed without gagging on it. We feel like he was so starved it was natural instinct and Cam is simply incredible saying he won’t be held back! Grandma Tricia Mogg aka Crusty is claiming credit because she introduced Cam to ice cubes which may have given him the needed practice. The wonderful OT even mentioned Cam could advance if the Doctors would allow it but that is for another day one step at a time. We plan to make an appointment with a nutritionalist to see if making our own baby food would benefit Cam more than the jarred kind as it really is only for learning purposes. Squash was his very first flavor aside from the prunes and cereal months ago. Cam didn’t take the full jar the first time but it didn’t take him long to figure out he enjoyed it. Now Cam takes his baby food and some bottle at a sitting with much needed deep burps from light pats on the back. The formula was heavily stressed to be extremely important for nutritional purposes and the little piggy still gets his 875cc daily formula limit, but the baby food helps stretch out that fluid restriction so he is much more comfortable waiting for his scheduled feeds.

Anyway the chest tube remains for now and we are taking care of it. I would think Cam should be able to claim some kind of chest tube record for most visits to the hospital. Besides that he has added some extra decorations to his battle wounds with chest tube holes maybe to look tougher or more unique… we don’t know but we know enough is enough. And yes Cam got back on his favorite bike don’t you worry we’ll get more miles on it soon! Thanks for following up on the little man if we have anymore info we will post, have a great weekend!

Cameron’s chest tube drainage has slowed down significantly and they will remove the chamber tomorrow so we will dry aspirate it every 4 hours. The options are to do a CT scan on him with contrast or another cath lab so they can get full pictures of him to see exactly what is the issue; however, both of these tests are difficult on Cam but we will need one of them soon.

Cam was on a feed restriction of total daily fluids at 800cc and it was increased to 850cc but it is still only Tolerex formula. He was having a rough weekend at first very upset about the surgery and chest tube, and he was not sleeping well or being himself. Mommy was so lucky to have Daddy this weekend to help as Cam’s discomfort made for a very long day and night. Cam is barely making it to his 3 hour mark with the limited feeds crying earlier and earlier for his bottle. Also, he was waking up crying at random moments during his naps and sleepy time which is our bedtime and lunch/dinner time. Anyway this last night seemed better and we hope to have a good week here at Children’s Hospital New Orleans.

Cameron is ok now but we were admitted yesterday morning to children’s CICU again for chest tube number 4 in the right side. Cameron has had 6 total chest tubes after the Glenn procedure done November 2011. Cameron had gone a few weeks without any chest tubes but we had been doing a weekly X-ray and sometimes an ultrasound following a small line on his right side. We came Monday morning for the weekly X-ray and sometime between then and Thursday 200cc of fluid built up in his chest (yes this is a lot for the baby’s chest area). No we don’t know why yet and there is a few possibilities such as diet, illness or heart function. They suggested doing a cath on Cam next week to check his heart functions.

Cameron was having a bad diaper rash from diarrhea since the weekend due to issues with his formula (we think) and he has been miserable. We changed his diet back to straight tolerex 20 calorie since Monday but the diarrhea continued and he was upset. I knew he was mad about these problems and not acting like himself grunting and wanting me to hold him all day, but he started eating again once we changed the formula back. I usually try to check his saturation levels in the morning and I wasn’t getting his normal 80-85 instead I was getting 70-75 which is too low for him. Also, he looked blueish to me in his face… most apparent in his lips. Also, over night I noticed he was really breathing heavy in his sleep so I called in for unscheduled appointments with all his Doctors on my list. We got an X-ray first and I asked for the Doctor to check him out in addition to the test because I could tell something was wrong. I really thought he was sick and had a virus or flu because it seemed like he was having trouble breathing causing him to be blueish. I did not expect the pleural effusion because we were just here Monday for that X-ray. When the nurse saw him in person they immediately took us to the back, put him on a pulse ox machine and called for the oxygen because they only got 60-65 for his sat numbers. The more and more aggravated he got the lower his saturation levels dipped and he was already mad about being held down for X-ray. Also, Cam does not like anything up his nose (like the nose suction bulb and/or pump) and boy did he put up a huge fight over the nasal cannula. Mommy tried to help but Cam ended up getting sedated to get him to calm down. After surgery he was holding his own and no longer needed the oxygen, but he is still groggy and grunts in his sleep maybe from the surgery and very long week. I hope to see a better day for him tomorrow now that the fluid is out and I hope he can get some rest and recover again. Yes it’s upsetting to see him here again I truly wish the pleural effusions would just stop and he could stay out of the hospital until his next procedure a few years from now. We will post more when we have additional information, thank you for the continued prayers!

Tiffany, Brian & Wyatt Jones set up a donation box for Cameron at Wyatt’s 2nd Birthday Party and asked that instead of gifts for their son to give the money to our Baby Mogg Medical Fund which pays for Cam’s medical expenses. The idea was that Christmas had been good to their family regarding gifts and they wanted to open up this day for another family in need. We wanted to send a special thank you to all those generous people who attended Wyatt’s 2nd Birthday Party and donated to our family. The funding helps pay for medical expenses not covered by insurance such as his special baby formula and extra formula powders as well as the compounding medication services both of which are very expensive.